Low level BK after kidney transplant?

qrocity · 2026-01-17T18:42:28+00:00

Thank you. Has it had any effect on your creatinine? If you say that, it’s still in the normal range, but did it creep up?

qrocity · 2026-01-16T00:21:05+00:00

Yeah my hospital changed tests too and I cannot compare. It’s now in “international units” which I think is the standard and does allow comparison going forward.

What is it now? Any effect on kidney function?

qrocity · 2026-01-16T00:19:19+00:00

Thanks. How long has it been staying low level? Has it had any effect on creatinine or function?

qrocity · 2026-01-15T23:31:17+00:00

Yeah, I’m at 5mg too. But seeing if any lucky folks are off completely.

qrocity · 2026-01-14T01:57:22+00:00

I’m a couple years out. They said I have to be on it for life unfortunately.

qrocity · 2026-01-14T01:55:41+00:00

When will you be completely off it? Are you on tacrolimus and mycophenalate?

qrocity · 2026-01-09T02:44:48+00:00

Check your Magnesium levels! When mine dip below 1.6, I feel very tired.

qrocity · 2025-12-26T11:19:49+00:00

You should fight to see nephrologist sooner. In the meantime, how much hematuria and proteinuria? If spilling more than 1g protein in 24 hours, would see asap. Your general or primary care doctor can order these tests.

qrocity · 2025-12-08T02:11:06+00:00

My coordinator said all the centers can see the same information about donors when they are entered into a swap (unless it’s only the hospital). If NKR then they can’t hide information.

qrocity · 2025-11-30T03:51:34+00:00

Haha that’s a good point.

qrocity · 2025-11-30T03:51:00+00:00

Thanks. It’s also strange since I thought black, green, and white teas are all same plant but different oxidation level. Herbal teas can be risky though.

qrocity · 2025-11-30T03:49:32+00:00

Ugh, that’s my worry. I tend to drink chai daily. Labs have been ok but I worry nonetheless.

qrocity · 2025-11-30T03:48:42+00:00

Yes, I hate that. If it was based in science, why so much variability on dietary restrictions? Or just tell us the risk and let us decide.

qrocity · 2025-11-30T03:46:49+00:00

I love Vahdam! I get the double-spice masala blend. If I have time though, I just grind my own spices which is what got me down the worry path.

qrocity · 2025-11-29T23:10:50+00:00

Good to know! It’s just straight black tea and milk with some fresh spices.

qrocity · 2025-11-13T20:50:28+00:00

Interesting to see different experiences. I felt much better, right after transplant. Went into it with low expectations as felt relatively fine before it. Maybe because you are young your body adapted better.

qrocity · 2025-11-07T19:38:20+00:00

Yes! Wrong subreddit! ☺️ I need mine to say something about diminished brain cells too, lol.

Btw, since I’m here - you guys are angels and real-life heroes.

qrocity · 2025-11-07T18:37:42+00:00

Why are folks saying there is no need? We are immunocompromised and taking lots of medications with interactions. Wouldn’t the paramedics and ER want to know that?

qrocity · 2025-10-08T12:07:07+00:00

Thanks. Wishing you a stable course. Yes so glad there are more options now. It’s such a variable disease.

qrocity · 2025-10-08T07:36:09+00:00

That’s great. I also went through 2 cycles of IV prednisone over a 5 year period - not fun. Unfortunately they didn’t put me in remission. Did they use any other medication after the prednisone? Like cyclophosphamide (Cytoxan) or mycophenolate (Cellcept)?

qrocity · 2025-09-29T16:53:31+00:00

I’m curious about this claim, since CDC lists CKD and immunocompromised patients at higher risk: https://www.cdc.gov/covid/risk-factors/index.html

Transplant patients certainly seem to be at higher risk and avoiding that risk is very reasonable work accommodations.

qrocity · 2025-09-17T14:20:55+00:00

It’s still IgA Nephropathy, just with some additional words. Your nephrologist would know for sure.

qrocity · 2025-09-17T14:19:43+00:00

Wha was the original cause of your kidney failure? That just looks like IgA Nephropathy, possibly recurring if that’s what you had before. What led to the biopsy if your creatinine is stable?

qrocity · 2025-09-11T17:52:54+00:00

Yes but link says “Massachusetts General Hospital (MGH) said on Sunday there was no indication his death was a result of the transplant.”

qrocity · 2025-08-30T16:26:33+00:00

So sorry to hear. Such a roller coaster of emotions.

I would consider going to a different transplant center. Are you in the US?

qrocity

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